‘I can start with my life again’: life-saving drug approved for BC woman with rare disease
“It’s like you go from planning the end of your life to planning the rest of your life,” said Shantee Anaquod, who has been lying in her hospital bed for more than a month suffering from an extremely rare life-threatening disease called atypical hemolytic uremic syndrome (aHUS).
But now, she is making history.
“People don’t have to be that scared anymore, that they know that there’s something that’s going to help them that they can try,” said Anaquod.
The 23-year-old is the first patient to get Solaris, as a publicly-funded treatment in this province.
The drug, which can cost up to $750,000 a year, can now be approved by a special committee on a case by case basis.
“You feel hopeless, and that’s a horrible horrible feeling, and now a lot of people have a better chance, which is great,” said Anaquod.
WATCH: Second case of aHUS found in BC in a six-week old baby:
Since first sharing her story 10 days ago the journey to this point has been a painful one.
“It felt like the forever fight that was, that wasn’t going anywhere,” said Jennifer Anaquod, Shantee’s mother.
She was forced to watch her daughter’s condition deteriorate, her kidneys fail, while the government determined her fate.
At least now the future holds some hope.
“It means that she gets to come home, something we weren’t planning before, it’s so exciting,” said Jennifer Anaquod.
As one family relishes victory, B.C.’s battle to bring the cost of the drug down, has only begun.
“The ministry is strongly objecting to the excessive pricing Alexion, the pharmaceutical company, has set Solaris,” said Adrian Dix, B.C.’s Health Minister.
But experts say Canada’s province by province approach puts it at a disadvantage, and previous attempts to negotiate with Alexion using a national body failed in 2016.
University of British Columbia (UBC) public health expert Steve Morgan told Global News “by comparison to all of our peers, we are actually very weak negotiators on the world market for pharmaceuticals.”
One message from the mother at the center of Shantee’s fight is to protect suffering patients from becoming pawns.
“They could’ve relived a lot of stress on our end by reaching out and working with us,” said Jennifer Anaquod.
Shantee Anaquod’s first dosage of Solaris was scheduled for Wednesday, but she was too ill to receive it and it has now been rescheduled for Thursday.
“Hopefully I start feeling better ASAP, and I can start with my life again,” she said.
Because tomorrow is what she never stopped fighting for.
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